Eight-year-old Virsaviya Borun is like any other girl of her age – she loves to jump, fly, and run.
The only difference is that Borun suffers from Pentalogy of Cantrell, a rare congenital condition, that has caused her heart and intestines to grow outside her body. The condition affects about 5.5 newborns in 1 million live births and can cause potentially severe, life-threatening complications.
A video uploaded to YouTube shows the girl’s heart beating outside her chest as she giggles and shows it to the camera.
“This is my heart. I’m the only one that has this,” she told the BBC in February as part of a short documentary on her.
“When I’m getting dressed, I put soft clothes on to not hurt my heart. And I just walk around, I jump, I fly, I run… Well, I am not supposed to run but I love running,” she said.
Doctors had warned her mother she would not survive but eight years later she is a “cheerful and talented” girl, who according to her Facebook Page enjoys “singing, attending art classes and making clay structures”.
Borun, who is originally from Russia, moved to Florida with her mother after several hospitals around the world refused to operate on her because of the risks involved in the surgery. Doctors in Boston have also refused to perform the surgery because of the “high blood pressure in her pulmonary artery”.
Her mother hopes that someday doctors will have able to provide her with the treatment she needs.